Kindergarten

Type 1 and LADA Parents of Children with Type 1 Diabetes
1

I'm preparing myself and my diabetic daughter for Kindergarten next fall (6 months away). I don't talk to the school about the diabetes stuff until a week before school starts. I mean nothing I can do about it now, except have anxiety over, "I wonder how it's going to work out next year".

There are TONS of sample 504 plans out there, and in my opinion they are ridiculously long and i just want to keep it simple.

Basically I want the following (p.s. we have pump and CGMS):

*I want her dosed for lunch 20 minutes before she eats. A class disruption??

*I want her to be required to eat ALL her lunch.

*I don't want her eating ANYTHING I don't pack.

*I want her lows treated exactly as I say.

*I want to be called/texted with ANY questions.

*I want her to come home if she vomits ever.

I read all these 504 plans that have tons and tons of instructions, like testing for ketones....and for me I think if there's any question that she has ketones she will come home, not dink around at school testing for them.

I'm just a little nervous because she is so young. Apparently there are several diabetics at this school and they have one person specifically trained to take care of them. This makes me feel good knowing someone knows about diabetes already and I don't have to start from scratch explaining it.

If anyone is willing to share any type of "quick reference" school diabetes instruction form, I would love to look it over and get some ideas. Again, I don't want the teachers to have to read a bunch of dialogue to figure out what to do in an emergency. I want it simple and easy to use. Like one page with colors and pictures or something. I was thinking a picture of my daughter, our contact numbers, a brief schedule of how the day is to work out around class and diabetes schedule.

I don't know why I'm being so neurotic about it.

2

Hi Sweet tooth! I am diabetic and raised non-diabetic little ones. I don't think you are being even a tiny bit neurotic, or maybe we just belong to the same group of crazies. Why our culture pushes tender little children, diabetic or not, into the impersonal hyper-scheduled world of school so young I will never understand.
It bugged me enough that I kept my children home and schooled them myself for Kindergarten and even first grade until they were a bit bigger. But I get that a lot of people can't do this because they have to work, or maybe they just don't want to.

If I were you I would get the name of the one person who cares for the kids with diabetes. Call him or her and set up an appointment at your home - Pay the person if necessary, and have him/her meet your daughter, and discuss FULLY how you want her diabetes handled face to face. If that's "not allowed" for some bureaucratic reason, heck with them - home-school her. But I am not you, and my "fierce mama" opinions in this area are just that- my opinions, no judgment intended!

Your idea of a simple form is great. If no one offers anything you like here, make one up. You sound like you know exactly what needs to be on it. You could test the form you design on a person unfamiliar with diabetes by describing various likely scenarios requiring specific action on the adult's part and see if test person would do the right thing? Just a thought.

Good luck with this. How does your daughter feel about it all?

3

I have to agree that w/ earthling that it's not neurotic. There are probably quite a few parents whose kids don't have interesting diseases like diabetes who will turn in *much* longer lists of concerns and instructions.

4

I urge you to consider the following in your plan... Not saying you are wrong at all, but I just want you to think of things from your daughters prospective for a moment.

If you exclude her from eating any food NOT sent from home, what happens when everyone in the class has a treat unexpectedly and she can not have it. I know almost everyone out here has experienced this from time to time and it was note easy by any means. At my brothers school, treats brought in by parents are ONLY allowed if they are in sealed boxes labeled with nutrition facts... this is to accomodate both Diabetic students who need to cover the snack with insulin, as well as children with food allergies. It may be more helpful to request something like that, and maybe to ask that they call you in the event a "special treat" shows up at school (not everyone plans ahead so it's safer to just request a call an hour or 2 before hand in my opinion). This way you can decide on a case by case basis what she can and can not have based on blood sugar readings, and other insulin on board, and all that other jazz.

Second, requiring her to eat ALL of her lunch is expected, and probably necessary, however, what if you child just doesn't FEEL like it. Do you have a picky eater. Might she behave differently away from home? What if there's something in there she decides she doesn't like? A better idea, might be (and again not saying you are wrong at all, you know your kid better than ANY of us), to pack say 4 or 5 things in her lunch. And say she needs to eat 3 of the 4 or 4 of the 5. That way, she has choices. If she doesn't feel like eating her apple then she doesn't have to, she can have carrots or whatever instead. That's sort of like going back to the old "carb choice" diet but modified a bit. Additionally, the school cannot FORCE your child to eat anything. So, you need a back up plan in case she will not eat. Maybe it's to call you so you can come up to the school and bring her home, maybe it's that the teacher has a selection of other things she can give her after calling you. You wouldn't want your precious little girl stuck at the cafeteria for hours while they tell her she HAS to eat all her food.

Keep in mind, kids WILL be kids. Friends (especially 5 y/os) are going to offer her snacks they brought, and she is probably gonna sneak some before the teacher sees if the teacher sees. That's just what they do! My brother is not allowed Ranch dressing at school, it's written right into his IEP and 504, but without fail he tries ALL the time and sometimes he does and then he gets sick and has to come home. It's a trial and error process.

A few final things, it is more than reasonable to expect she be given her insulin 20 minutes before lunch. It is more than reasonable that they would treat her lows exactly as you spell out in the 504 plan. She should never (no kid should ever) have to stay at school if she vomits or her sugars are high. I can barely think straight when my sugar gets over 250, how frustrating!!! And what a waste of time for everyone if she is sitting in class unable to think, focus, concentrate, or learn! And they should call you with ANY and ALL questions. I would suspect if they have other children in the school with D and have hired someone to help manage all of them, they are used to these type of things.

I would request 2 meetings if it were me. One maybe asap, with her teacher and the school nurse or whoever is going to be playing that role. Explain to them, and ask them what they think. If you include them, let them give ideas express concerns. This will allow them to not feel like you are coming in and "disrupting" which you worry about a bit. And who knows, they may have some ideas you haven't thought of before, or some things you need to add. How educated is the diabetes person. Does she know about carb counting, or ketones, or glucogon,maybe she does and that's fantastic. But if not, you need to know where to start. Then go back, come up with your plan/training and meet with EVERYONE the week before school.

Your daughter will do great, because she has a mom who is already excited and planning ahead.

5

My best advice to you would be to remain open to being flexible.

Your school will no doubt require the Medication Admin form and orders from the phys on how to treat and they will follow those orders exactly (not what you want) so you should sit down with the pcp or endo (whoever is going to write these) and have them written the way you want. I feel my child is "over"treated for lows and it annoys me but that's how the orders were written and that's how they will treat her. These orders are meshed with the Student Health Plan.

The 504 plan is not the medical orders for my child. It is the list of her needs and the accommodations for each need that is required. For example: Need: Health Care Supervision Accommodations: Three trained and delegated adult staff will be responsible for dm care during school hours, all extracurricular activities, and any school sponsored event. Sophia's parents will not be required to accompany student on field trips or any other school sponsored event. (Although I attend all of these events).

I didn't meet with my child's staff until the week before school started and I thought that was crazy but it all worked out fine. They were very prepared and have taken great care of my daughter. She is the only one in her school with Type 1 diabetes..... Good luck!!